Palliative and End of Life Care: Tackling Variations, Eradicating Inequalities

Overview

Open Forum Events are pleased to host a further conference focusing on Palliative and End of Life care. This latest event is the third in a highly successful series of mindful events that brings together those affected by and caring for people nearing the end of their lives.

Approximately half a million people die every year in the UK. Three-quarters of these deaths are not sudden but are expected, requiring specialist care and treatment during the final days, in accordance with the wishes of patients and their families. The Palliative and End of Life Care: Tackling Variations, Eradicating Inequalities conference aims to confront the inconsistencies and seek to provide the answers to providing standardised, personalised care to everyone, everywhere.

Although The Economist ranks Britain as the best in the world from among 80 nations for delivering end-of-life care, there is discrimination and gaps in the quality of provision. Not everyone receives the same standard of care with an estimated 100,000 plus people in the UK not receiving the palliative care that would be of benefit. These variations need to be addressed to ensure, whenever possible, that those who are dying experience a good death according to their wishes and needs. The evidence shows that the discrimination in care provision affects different groups in society and those who are vulnerable due to circumstances on a disproportionate scale.

The Palliative and End of Life Care: Tackling Variations, Eradicating Inequalities conference will seek to address where and why the anomalies arise in the standards of provision and how equity in access, quality and experience can be achieved for all terminally ill people, across all of society. The event will feature a highly informative agenda, presenting speakers who are experts in their field, plus examples of best practice which delegates may feel appropriate to adopt into their own provision arrangements. Delegates will have the opportunity to question, discuss and debate the very latest thinking, as well as share their own stories and experiences with the conference.

Every patient suffering with an incurable and progressive illness deserves the very best palliative and end of life care with their own choices at the very heart. In the UK there have been some significant improvements in the care people receive as they near the end of their lives with some excellent examples provided in different settings. However, the fact remains that the experience for people approaching the end of life can be very varied and for some, the quality of care is unacceptably poor.

It is estimated that one in five dying people are not receiving the care they deserve. A survey undertaken in 2015 reported that 30% of people who died in hospital received ‘poor’ or ‘fair’ care according to their families or carers, whilst 40% stated they were not shown the appropriate dignity and respect deserving in an end of life situation. 19% of those dying at home did not receive the appropriate levels of pain relief to give complete comfort all of the time.

People from certain groups experienced poorer quality care at the end of their lives than others because providers and commissioners sometimes fail to understand or fully consider their specific needs. In 2015, Marie Curie commissioned a report to investigate the evidence about the fairness of access to palliative care. The findings revealed that people over 85, single people and patients suffering from a non-cancerous terminal illness are the groups most likely to be missing out on quality care.

Other groups in society are also subject to reduced levels of provision resulting in poorer outcomes. Those from black, Asian and minority ethnic (BAME) backgrounds, the gypsy and traveller community and LGBT people are less likely to be able to make real choices and receive quality care. Similarly, people living with learning disabilities or mental health issues and those that find themselves in vulnerable circumstances, such as homelessness, also are at risk of receiving diminished quality of care.

In May 2016 the Care Quality Commission (CQC) published a report, ‘A different ending: addressing inequalities in end of life care’. This review highlighted concerns that the quality of care being provided for people at the end of their lives is not of a consistently high enough standard or sufficiently personalised. Whilst compiling the report the CQC did find some examples of good practice, however, it concluded to provide quality and truly personalised end-of-life care for everyone further improvements need to made, in particularly with communication between healthcare staff and those who were dying and their families.

The Palliative and End of Life Care: Tackling Variations, Eradicating Inequalities conference offers the thoughts of highly knowledgeable speakers, sharing both professional and personal experiences. It is ideally placed to update delegates on the latest findings from research conducted to give an accurate picture of the experiences of patients nearing the end of their lives and their families. The day will look to explore how future care can be improved for all and share some of the excellent examples of good practice.

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Event Programme

Time:

Event:

Registration and Coffee in the Networking Area

Chair’s Opening Address

Simon Chapman, Director of Policy & External Affairs, The National Council for Palliative Care & The Dying Matters Coalition (confirmed)

09:30

Keynote Address

Professor Julia Verne, Clinical Lead of National End of Life Care Intelligence Network, Public Health England (confirmed)

"Achieving Equity in Palliative and End of Life Care"

How can the variations and inequalities within palliative and end of life care be eradicated ensuring that access, provision and quality is standard for all.

09:50

"Tailoring Care to Meet Individual Needs"

Care providers need to recognize that a ‘one size fits all’ approach only serves to widen the gap in providing quality care. Taking into consideration a person’s background, characteristics and circumstances can help them receive good care whenever and wherever they need it.

The ReSPECT process aims to respect patient preferences and respect clinical judgment through shared conversations between a person and their healthcare professionals. One of its principal aims is to make sure people understand the care and treatment options that may be available to them and that may work in a medical emergency, and to allow them to make healthcare professionals aware of their preferences.

St Helena Hospice has been a joint commissioner of End of Life Care with North East Essex CCG for 3 years. This presentation will demonstrate how we identified local inequalities and how we are addressing them. Examples include the local Palliative care register, our 24/7 Single point of access, the Safe Harbour project (in partnership with Macmillan) which reaches out to marginalised groups, our work alongside the local mental health trust with people with advanced dementia and our current focus on care homes.

10:50

Question and Answer Session

11:15

Coffee in the Networking Area

12:00

Sponsor Presentation

Statistics show that patients with a very short life expectancy mostly tend to be keen on talking and communicating about and with their loved ones until their passing away; what if we could go beyond…WA is a mobile application accompanying its users into a kind of eternity. We believe that although death may end our lives it should never end our relationships.We are present at the event because we also believe that those affected by End-Of-Life care, need unique and revolutionary relief and final occupation options, not only for the patients themselves but also for their families and their caregivers.

12:20

Tony Bonser, Chair of People in Partnership, The National Council for Palliative Care (NCPC) (confirmed)

Compassion in Dying has completed a programme of work to engage BAME groups in planning their end of life care, addressing cultural barriers to advance care planning and ensuring that each individual’s beliefs and values are at the centre of decision-making.

13:00

Question and Answer Session

13:15

Lunch in the Networking Area

14:15

Chair’s Afternoon Address

Commissioning is key for making sure that the right services are available to meet local need, and that they are sensitive and reactive to the needs of all those approaching the end stages of their lives.

Issues surrounding equity of access to care services and other matters, such as housing, can prevent people to exercise their right to choose how and where they die. Social care professionals can be instrumental in removing some of the barriers in fulfilling patient’s wishes.

15:20

Question and Answer Session

15:45

Chair’s Closing Remarks and Event Close

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Manchester Conference Centre

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